Wednesday, May 31, 2017

Eddie From Ohio

This is a long overdue post. Back in January, Kevin and I left Finn at his grandparents' house for his first ever sleepover so we could see my favorite band, Eddie From Ohio. This year's concert had extra special meaning for me.

The band is an alternative folky band. Their shows are energetic, engaging, and fun. They have amazing voices. I've been a fan since I first heard them in 2000, and I have lost count of the number of times I've seen them play. The past few years, Kevin and I have gone to see them during their annual show at The Birchmere in Alexandria, VA. It's a three-night performance held either on Martin Luther King, Jr. weekend or Presidents' Day weekend. This year, it was MLK weekend, and we got tickets for Friday night.

When I was pregnant with Finn, I sang one of their songs, Hey Little Man, to him frequently. Since he was born, we've sung it to him every single day. We were amazed when he was first born that simply starting to sing that song would calm him almost instantly.  Most nights, as we put Finn to bed, he begins to settle and is still by the time we get to the end of the song.

I was both excited and nervous this time. I have met the band members several times, as they usually sign autographs and CDs after the show. This time, however, I had decided I would talk to Julie Murphy Wells, who has been an inspiration for years, but much more profoundly in the past year.

Julie is a breast cancer survivor, too. She was diagnosed in 2005. I remember reading the email the band sent out explaining why they'd be reducing the number of shows they were playing. She set up an email account for those who wanted to send her well-wishes. It was her sense of humor that stayed with me, and why she was one of the people I looked to when figuring out how to navigate this world I'd been unwillingly dropped into. Her email address was myleftboob at hotmail dot com. Come on. How awesome is that? I didn't follow her story too closely as it was happening; I was 25 and never considered I'd be diagnosed with cancer ten years later. I remember seeing her play shows in the midst of treatment. I remember being amazed that she was able to do it.

I think it's pretty easy to see that Kevin and I both have relied on humor to get us through this journey. I mean, the blog is called Janet Versus the Titmonster. It's a big part of both of our personalities to deal with challenges by reframing and laughing, but I definitely had a strong example of how to do this when death is on the line through Julie Murphy Wells.

I'd tried to write an email to her a couple of times, and I always felt silly, like I was seriously fangirling. I mean, I was; besides her voice being completely amazing, she really has been someone whose story I keep looking to as I figure out how to navigate being a mom with cancer.

So after the show (maybe my favorite one ever!), Kevin and I waited in line to talk to the band. Julie was at the near end of the table. My voice betraying my nerves, I told her I wanted to thank her. I briefly shared my story and told her how inspiring she has been for me. I fangirled about the music, how much I've always loved it, but mostly how seeing and remembering so clearly how she accepted her diagnosis and how she didn't shy away from it or try to hide it but instead faced it with humor and grace gave me the courage to do the same.

Y'all, she's as nice and genuine as she appears. We hugged, we took a couple of pictures, and she asked me to share them with her. (Oops. I am going to do that before I post this. Can I blame chemo brain for this, too?) (Update: Did this. She replied. She's awesome.)

Anyway, here are some pictures.
















Sunday, May 28, 2017

No Mo' Chemo

On Thursday, May 25, 2017, at 8:27 pm, I took three pills. They were my last dose of chemo, hopefully forever.

Earlier that day, I texted Kevin and asked him who was picking up the celebratory ice cream cake. He said he would, so I went home after getting Finn and started preparing a fancy dinner, steak au poivre with cauliflower au gratin and green beans (it wasn't difficult, thanks to Home Chef!).

We waited for cake until Finn was asleep, because we're selfish and didn't want to share it was already late, and I had a beer to go along with the cake. Of course I used my Iocaine Powder pint glass. My chemo doesn't dissolve instantly in liquid, but it's still a poison. Kevin told me the Baskin Robbins staff was a bit taken aback when they asked what he wanted the cake to say. He had to assure them the cake was a good thing (it was all ice cream: mint chocolate chip and chocolate chip. How could it not be a good thing?).

The last time I finished chemo, last August, was less of a relief. It's when my anxiety really kicked in, as it was the end of active treatment for a month or more. I've been looking forward to the end of this one. I had a lot of side effects from the capecitabine, enough that my oncologist reduced my dose after the fourth cycle. Indigestion, nearly constant nausea, and hand and foot syndrome (erythrodysesthesia) were the biggest side effects for me. The hand and foot syndrome was the one that gave me the most trouble, to the point where I couldn't walk by day ten or so of each cycle. Once I started the lower dose, it improved significantly. My hands and feet are still blistery, cracked, and peeling, but the associated pain is much more tolerable. I hardly had any nausea for the last two cycles either, and I'm almost back to being able to eat normally again.

I'm glad to be done. I'm still a little uneasy about it though. I wonder when...if...the fear of recurrence will begin to ease. I heard about another trial I may be eligible for that is immunology based. I've requested more information about it and will learn more at my next oncology appointment in a few weeks.

Oh, that's another thing. I don't have to go to the hospital for blood work every three weeks and then back the next day to see my oncologist. I deleted my phone alarms to remind me it's "Chemo Time". I didn't have to wake up early this weekend to eat and then wait half an hour to take the pills. I haven't been nauseous in three days. I won't get another box from the specialty pharmacy with the pills in biohazard bags. I won't have anymore chemo co-pays. Soon, my skin will begin to heal and I won't have to sleep in lotion gloves and socks. Maybe Kevin will stop saying "Pizza Time" in the creepy voice from the Little Caesar's commercial (see Chemo Time link above). Maybe.

I waited until Kevin had proofread for me to mention that hopefully he won't remember that once my counts recover I *could* potentially maybe-if-I-had-to start scooping the stupid cat boxes again. Don't tell him.

Thursday, April 27, 2017

Loss

Fuck.
I'm not even going to apologize for the language. Fuck cancer. Fuck fuck fuck.
I'm in a Facebook group for women who were diagnosed with cancer while pregnant. It's been a really helpful, really supportive group.
A few minutes ago, I learned a member of the group died yesterday. I didn't know her personally, just from the group, from reading her posts and us commenting on the same posts. She had triple negative breast cancer.
She finished treatment recently. She had a lot of pain. She saw her doctors. They found more cancer. Her cancer had metastasized, spread to her bones. Within six weeks, she was gone.
I'm sitting at my desk, a pile of overdue paperwork waiting on me, a schedule of sessions that's gone out the window now, because I'm in no condition to see clients right now. I'm sitting at my desk, and I'm sobbing.
I'm crying for her family, for her small children, her husband, her parents and siblings and friends, and all of the people who knew her joy and her wisdom personally and through the magic of the internet.
I'm crying in terror and hatred of this evil beast called cancer, which has taken so many people I love, which threatens all of us, which threatens me.
I'm crying for me. I'm crying because I cannot imagine the pain her family is going through, and yet I imagine it every day. I'm crying because I know the fear she must have felt when she received the news, because it's the fear that lives in my gut and springs up when I wake in the middle of the night and when I walk into my oncologist's office for yet another appointment and when I hold Finn close and tell him I will love him always and forever until the end days. I am crying because I am terrified that her fate could be my fate, and damitall, I want to live!  I need to live.
Her story is not the same as mine. I know that. Her situation is not the same as mine. I know that. I am doing everything I can do to reduce the chances my cancer will come back. I know that. But my cancer has a 50% chance of recurring in the first two years. I know that. I am taking the oral chemo, which showed a reduction in recurrence of around 15% for triple negative breast cancer. I know that, too.  

And then my office phone range because the parent for my forgotten family session arrived, and I had to quick pull myself together, wash my face, and then walk through the school with my bright red and puffy face.
The distraction was helpful though. Who knows how long it'd have taken me to calm down and recover if I hadn't been forced to in a hurry?
But cancer still sucks. Even worse than the fear of chemo harming the baby (although I knew the studies showed it was safe), even worse than the side effects of treatment: the hair loss, the pain, the exhaustion, the stomach issues, even worse than having to stop working before I was ready, even worse than the financial cost, even worse than the chemo brain, worse than all of that is the constant--and rational--fear that the cancer could return. And if the cancer returns, it could mean death. I'm just not ready for that. I don't intend to be ready for that for another fifty years or so. It's not that I'm scared of death, not at all. I'm scared of not living. What a place to be trapped.


I'm not proofreading. Excuse any errors you find.

Sunday, April 16, 2017

Easter Musings

Spring. Easter. Heartache. Change. Hope.

Thursday will mark two years since we lost Pantalaimon. I found out on Good Friday two years ago that I was probably going to miscarry, that the baby we had hoped for and tried for since the previous summer appeared to have stopped growing and did not have a heartbeat. On April 20, I had a D&C, as my body had not yet figured out that I was no longer pregnant. 

Last Eastertime, I shaved my head on Good Friday. I donated my hair to Pantene's program and raised almost $4,000 for St. Baldrick's Foundation. I wore my wig to the Easter Vigil on Saturday night. My sisters and their kids came to visit over their (and my) Spring Break, and we had a great time. 

Last Thursday, I saw my radiation oncologist for my followup appointment. It was so weird to be back there. For two months, I hurried there after work, talked with the staff while waiting for my treatment, showed pictures of Finn if he wasn't with me, handed him off to whichever staff member had volunteered to play with him while I got my boob zapped if he was. For two months, I was deeply involved with the staff there. It was my routine; it was part of my life. And then, with a burnt, peeling, painful boob and the ringing of the radiation bell, it was over. I brought in some peanut brittle and a Christmas card, and that was it. Life went back to...well, I'm not sure there is a normal yet. 

Friday, Good Friday, my mother was admitted to the hospital for chest pains and a suspected heart attack. Just this morning, we learned there was no blockage, and they suspect the episode was related to her blood pressure, which she's had difficulty controlling over the last month. We're grateful, so, so grateful that she is okay. She is going home this afternoon. 

Saturday, I went to the Easter Vigil. Kevin stayed home with Finn, as the time overlapped with Finn's bedtime and Kevin was not feeling well. I needed to go. I needed that touchpoint, that connection, that peace and comfort and solace that comes from the celebration. I had said to Kevin earlier in the afternoon that it didn't really feel like Easter. We were out of town on Palm Sunday, and the 7pm start times for services on Holy Thursday and Good Friday were just too difficult with the baby. It was weird for me to not have those moments. I missed them. And then on Saturday night, we gathered in the beautiful sanctuary at First and St. Steven's UCC, and we had an amazing service. We started in the courtyard with the new fire, the new light. We lit the Easter Candle, we sang the Gloria I love so much, the Sing Glory to God one that takes me back to my days at Western Carolina. We praised, we read from the Hebrew Testament, heard phenomenal reflections, read from the Christian Testament, heard more reflections. We sang Alleluia for the first time in over 40 days. I proclaimed the Gospel; David, bishop and pastor, nailed the homily once again. We broke bread, remembering why we do so, remembering that it is only by being broken that the bread gives us life that makes us whole. We shared peace. We shared peace. We shared peace.

Sunday we celebrated Finn's first Easter with treats from the Easter Bunny, which included new toys to match his development, shoes as he gets ready to start walking, and several books. Kevin and I each got some excellent socks, a couple of games (Joking Hazard for me, Catan card game for Kevin), and a few other treats and candy. We spent the afternoon at Kevin's aunt and uncle's house with lots of family, food, and Easter activities. For the past several years, we've had an adult Easter Egg Hunt, where the prizes are booze and scratch off lottery tickets, and the like. This year, with three young ones in the family, we also had a kids' hunt, though Finn and I napped through it, since he skipped his afternoon nap. The other family tradition is the Schenning Egg Picking Contest. It is a big deal. I'd never heard of egg picking before meeting Kevin, nor have most people, even other Baltimoreans. Wikipedia talks about it here, and the Baltimore Sun wrote about its Baltimore roots a few years ago.  Holy smokes. It was more than a few years ago. 1993 was 24 years ago. How is that possible? Anyway, at my first egg picking, I came in second place, losing to Kevin's dad in the final round. This year, I was knocked out in the first round, despite our efforts to boil hardier eggs using the Instant Pot rather than the stovetop (Kevin and Finn both lost in the first round as well. At least those eggs are easier to peel.)

At this time of year, that time which for me is so full of joy and hope but also and fear and sorrow, it has been a week of shared peace. We are an Easter people, and even at the grave, Alleluia is our song. 

Sunday, April 2, 2017

Hope 4-2

Today is April 2, known as Hope For Two Day, celebrating women who were diagnosed with cancer during pregnancy. I was diagnosed with an aggressive form of breast cancer when I was 22 weeks pregnant. I had found a lump a couple weeks before that. 

Despite the incredible support I found in family, friends, medical providers, and strangers, it was in many ways a very isolating experience. I have since found I am not alone. I knew there were other women diagnosed while pregnant, but I'd never even heard of another, much less met another. 

In January, I finally went to a meeting of a support group that I'd known about for a while but hadn't ever been to. There, I met another woman who was pregnant and underwent treatment for her cancer. Her child is now about 4 months old. She told me about and added me to a Facebook group for women diagnosed while pregnant or breastfeeding. I have come to love the support of the group and the women in it. There are a couple hundred of us, all different cancers. Some are recently diagnosed; some are many years post treatment. Some are living with metastatic disease. That scares the shit out of me. 

Knowing I'm not alone has been a confusing and powerful experience. It's comforting to know I'm not alone. It's really crappy to know I'm not alone, that other women and their babies have had to go through this as well. Right after I joined the group, someone put together a video of women sharing their stories. I waited until Kevin was with me to watch it, because I knew I would have all of the feels. I cried throughout. So many women. So much strength. So much love. So many uplifting stories. Watch the video here.

Yesterday Kevin and I went to the Breast Cancer Survivorship Conference hosted by Hopkins. We went last year as well, and it was as excellent this year as before. We had lunch at a table with two women who were diagnosed last year, also while pregnant. One was the woman who added me to the Facebook group, and the other is someone I've been Facebook friends with for a while but hadn't met yet. Her child is almost the same age as Finn. The three of us were all diagnosed with breast cancer while pregnant; we were all pregnant at the same time; we all live in the Baltimore area. It's kind of...bizarre. I'm having trouble figuring out how to describe all the feelings it gives me. 










Blerg. I wish I could figure out how to format pictures the way I want to on this site. It drives me batty. 


Tuesday, February 21, 2017

All the Feels

So this is a post I've thought about writing for a while but never got around to it. It's about feelings...appropriate for a social worker/therapist, yes?

I put on a good face most of the time. I project a positive attitude about my circumstances. Most of the time, it's a true portrayal.

I want to be a bit more upfront. I want to talk a bit about the downside of cancer, about being pregnant and getting the diagnosis, about the toll it has taken on my mental health. I don't think we talk about it enough.

First, I want to say that I try really hard to keep a positive outlook because it's critical to my well-being, both physical and mental. I also often find it easier to be more positive because I have so many amazing people in my life, and you all make it much easier to cope. Kevin is the most supportive and loving person I could ever ask for, and our incredibly amazing and healthy little boy gives me all the encouragement I need to keep going.

But there are days when the monsters creep in. I'm not talking about The Monster, my adorable snuggly puppy dog. I'm talking about the depression and the anxiety monsters. Depression is no stranger to me. But around August, I really started noticing the anxiety. It was new to me, at least the intensity of it was, as was its presence without my usual depression symptoms. At first, I thought it was just normal new-mom stuff. I'd zoom in on the video monitor every time I woke up during the night to check that Finn was still breathing, and if I couldn't tell, I'd go into his room and make sure. I couldn't stop imagining scenarios, horrible scenarios, where something happened to him, or something happened to Kevin, or something happened to me. I kept fearing my cancer would return (it wasn't even gone at this point), and I'd imagine Finn growing up without his mother.

I felt on edge; it was difficult to stay still. I had physical symptoms as well. I'd get a pit in my stomach that wouldn't go away. My chest would feel tight.

It didn't get better. It got worse.

Finally, I called the cancer center and asked to talk with the social worker. I met with her a couple of times, and she referred me to a psychiatrist who works with the Breast Center. I didn't want to take medication. I figured that if I just talked with a therapist for a while, started processing through all I'd been going through in the past six or seven months, it might be enough.

But after a couple of sessions, I decided that I'd go ahead and talk with the psychiatrist. If the therapy wasn't enough (which seemed relatively likely, given my history) and I ended up needing to go on medication anyway, it would be another six or so weeks until the medication would start working. I didn't want to have to deal with that. The anxiety was interfering with my daily life, and I needed some changes.

I met with the psychiatrist, who was shocked I wasn't taking something already, especially something to quell intense periods of anxiety. She said she rarely prescribes those to patients from the breast center, because they've usually been prescribed it already by the oncologist. I assume I wasn't even offered it because I was pregnant, but I also did really well for all of my pregnancy, and even several weeks after.

So she gave me a prescription for Ativan and another for Lexapro. She suggested I take an Ativan before I needed it, to get an idea of how I'd respond to it. I took it on an evening when I didn't have anything to do and when Kevin would be around should the baby need anything. I didn't really notice any difference, but I did sleep pretty well that night.

A day or two later was my radiation simulation. I knew from talking to others that I'd be exposed from the waist up for a couple of hours. I knew it would be hard for me, especially when they said Kevin wouldn't be able to be there for all of it, so I took an Ativan. It helped a lot, and after my second or third radiation treatment, I didn't need it anymore.

The Lexapro has helped immensely. I'm feeling more stable, and I'm much better able to reality check myself when I start going goofy.

There are still rough days. When I found the lump (that ended up just being scar tissue), I was definitely glad for the Ativan. I've used it a few other times, when life just gets overwhelming, and it helps me to find calm.

People like to hear positive stories, positive experiences. Cancer sucks. I try to be positive. I try to be uplifting. It usually works, and I can keep a sense of humor about it. But really, it just fucking sucks. And I'm grateful for the psychiatric help.

Sunday, February 19, 2017

Chemo Braain


Chemo brain. It's real, and it's frustrating as all get out. I've been dealing with it for a while now, but it's getting worse. Maybe I'm just less tolerant of it, but I think it is getting worse. I had known about it since my first oncology visit, but it wasn't ever a big deal. I'd laugh off stupid mistakes as either pregnancy/new mom brain or chemo brain depending on my mood and the circumstances and not give it a lot of thought. Once Finn arrived, pregnancy brain wasn't really an excuse anymore, but new mom brain was. Then he started sleeping through the night after a couple of months (yes, we're very lucky), and so I started sleeping better, and new mom brain didn't seem very accurate either. Now I'm 6+ months out of my first chemo journey, and only three and a half weeks into my oral chemo journey, and it definitely seems like chemo brain.

For example:

After the car accident in November, my car spent over a month in the shop. It was finally ready two days before Christmas. I was off that day, and Kevin was working from home. He kept the baby while I took the rental car to go pick up my car about twenty minutes before the shop closed for the holiday. I got there, picked up my keys, said thanks, and walked out to my car. I moved everything that was in the rental into my car, and then it hit me. I had two cars and one me. I called the rental car company and they said they could pick the car up from the shop if I brought the the keys. Phew.

I've driven past the beltway exit to my house multiple times. I still have to GPS the best way to get back home after doing so. I cannot commit the route to memory. On that note, I've also gotten on the interstate going the wrong direction at least three times in the last two weeks. In case you're curious, it's a royal pain in the ass to go south on 95 in morning traffic when you're supposed to go north, and it adds a lot of minutes to the journey. I'd tell you how many, but I can't remember.

I have had to ask the medical assistant at Finn's pediatrician to repeat his weight and height measurements to me on several occasions, because no less than seventeen seconds after she tells it to me, it leaves my brain.

I have missed Punch Bug opportunities because I'll yell out Punch Bug Red when it's clearly a white bug.

I've gotten to the car after a shopping trip only to remember something I needed and had to go back in. This has happened multiple times. An embarrassing number of times.

I goof on the math regularly when making Finn's bottles, which means I often have to mix up more formula at the end. Math has never been my strong suit, but I used-to-could add pretty well.

I cannot tell you how many times I've had to reset passwords in the last few months. I had to reset my library password twice this week because I couldn't remember it the first time I signed in, and then I couldn't remember the new one when I signed in two days later. I got locked out of my medical record website a couple of weeks ago and had to call my doctor's office to get it reset. That little adventure took several days to rectify.

I went to get my lab work done for my chemo on Friday afternoon. I was going to do it Thursday, but I forgot the paperwork. I also forgot it Friday morning, so I stopped at home after picking up Finn, chatted with Kevin for a bit (he was working from home), got the papers from my notebook in the basement, and went upstairs to leave. Kevin called up to me to hold on, and then he brought me the papers. I finished filling my water bottle, and left for the hospital. As I parked my car, I realized I left the papers on the counter. Fortunately, the lab request was in the computer so I didn't have to go back home to get them.

I asked Kevin to tell me more examples of my chemo brain, and the first thing he said was, "I assume you wrote about forgetting your lab papers already." Nope, I sure hadn't.

Those are the more humorous stories, the ones where it's easy to laugh at myself. The frustrations come when it has real effects on my life.

Yesterday morning I left my vestments at home. I was supposed to serve as deacon at a friend's memorial Mass. I realized it when we were five minutes from the church, and there wasn't time to go home.

I forget things almost instantly, even when I'm trying.

It takes me at least twice as long to do basic tasks at work. On Thursday, I stared at my computer for two hours trying to do my progress notes. In that time, I managed to contact a parent and complete my time sheet. My time sheet was due the day before.

I just typed do instead of due on the previous sentence.

I finally understand my ADHD kids, how they can sit in a class and just not do the work. It's really not a choice. They straight up can't focus their brains to do the task. I get it now, in a way I wish I didn't.

It's hard to see all my clients in a week, even with a significantly reduced case load. I hate it. I. HATE. IT. I hate this part of me, this part where my brain stays in a fog and I can't function like I'm used to, like I want to, like I need to.

I'm learning to cope with it.

I make lists constantly--I love the Notes app on my phone, but I use good old fashioned paper as well.
I also use the reminders app, and I set timers and alarms for all kinds of things--including taking my medicines.

I ask for help. I depend (too much?) on Kevin to help me remember things I need to do.
I'm working on improving my organization methods. They work well enough for the old me, but not for my new normal.

God, I hope it isn't the new normal but just a temporary state of mind.

I also let myself get frustrated sometimes. Thursday was definitely one of those days. I vented to people who would understand, and I had a good cry at my desk at work. I ran away for a bit--I had to go to Costco that day anyway, so I left at lunchtime and did my shopping then, hoping the time away would help clear my brain so that when I got back, I could focus a bit better. It helped a little.

Tomorrow, I've got an oncology appointment. I'm going to ask about it. I'm hoping there's something we can do, because this mess is no joke. I really want to get back to being me.







I misspelled the title of the post on purpose. It amused me.